Sunday, January 31, 2010

Something is shifting

I noticed this before the rash/Predisone weeks....I began to think in terms of years ahead.

Then, the "reaction" happened, and all the drug chemical haze stole away my clarity.


SOMETHING has shifted.

I haven't been that "mom" I used to be for Bug for a long time. I am not judging the time I have spent healing, because Bug has been learning a lot about life that most kids don't and I am proud of how we've handled it all.

But, once again, I just noticed this week, something has shifted. I have this energy to give to her again that I haven't in a long long time. Honestly, I was coasting a lot of the time (not neglectful, but not proactive/interactive as much). I know she has been cared for, and shown the world by OTHERS, but not so much me. With me, we are always at home lately and often in the last year and a half. I have a day or two of energy to give to the way things used to be.

But this week, we start rough housing/ticking/playing! We both looked at each other and noticed it!!!!!!!!!!

This morning, we went out for a morning walk together, we drove to our starting spot, and no one had to drive us! And along the way, had our old discussions, instead of me driving on autopilot, just trying to get us "there" and being spacey the whole time and just using all my energy to even walk with her. Instead, we EXPLORED together. Finding the bike shop, the art store, talking about these topics, about the town, and I was engaged fully in teaching her how to get around town on foot. Street names, mountain names, answering so many questions. :)

And at home, over breakfast, we had a whole discussion on the dairy we drive by on front street. Ending with a diagram, and that showed how the milk gets from the cow, to the table. And about the environmental impact, complete with drawing.

I spent time reading art books, the local newspaper (best one I have seen since Corvalis) and art ideas starting popping into my head.

I did taxes, bills, and bookkeeping.

Tonight, I walked (somewhat horrified and overwhelmed) into her unkept, not yet unpacked (boxes still) room, and as a family, we sorted, played, talked, prioritized, and decorated some. (In the end, I did end up crashing and not finishing, and Kara came and read Camelot to me). My friend did the initual set up, and I have been to sick to do bedtime. So I haven't spent much time in that room. But now ;) WONDERFUL! Not done, but we did it as a family and start somethin good....

And now, in my normal midnight wake up, I am reading my mothering books, catching up on developmental issues, gifted issues, and reading forums.

The one thing that has been the hardest in all of this is not feeling like I am "mothering",

But as I scowering the internet for some mothering information, a small pile of natural mothering books next to me, art books at my feet, at the book she read to me at bedtime about Merlin and Kind has dawned on me FULLY..... ...I AM BACK. ;)


Thursday, January 28, 2010


This came in my email from a dear dear friend who has kept me afloat and helped me get through this tangled mess. So beautiful, I share it with all of you who are the "divers" in this story. You know who you are:

This story was passed on to me from a dear friend and I
had to share it with you since I thought you might appreciate it :)

Love you,

The Whale Said "Thank You"

If you read a recent front page story of the SF Chronicle, you would have
read about a female humpback whale that had become entangled in a spider
web of crab traps and lines. She was weighted down by hundreds of pounds
of traps that caused her to struggle to stay afloat. She also had
hundreds of yards of line rope wrapped around her body, her tail, her
torso, and a line tugging in her mouth.

A fisherman spotted her just east of the Farallon Islands (outside the
Golden Gate area) and radioed an environmental group for help.

Within a few hours, the rescue team arrived and determined that she was so
bad off, the only way to save her was to dive in and untangle her. They
worked for hours with curved knives and
eventually freed her.

When she was free, the divers say she swam in what seemed like joyous
circles. She then came back to each and every diver, one at a time, and
nudged them, pushed them gently around. She was thanking them! Some said
it was the most incredibly beautiful experience of their lives.

The guy who cut the rope out of her mouth said her eyes were following him
the whole time, and he will never be the same.

May you, and all those you love, be so blessed and fortunate to be
surrounded by people who will help you get untangled from the things that
are binding you. And may you always know the joy of giving and receiving

Sunday, January 24, 2010

I am in love with...

I am in love

I am in love with...peacefulness and ease

I am in love with....the turn of the wheel

I am in love with....times of fear

I am in love with...times of joy

I am in love with...that all things shall pass

I am in love with...the beauty of the human spirit

I am in love with....learning

I am in love, and sound, and it's ability to shift any energy to a state of balance

I am in love with...mystery

I am in love with...knowing I am loved

I am in love with...knowing I am safe to just be

I am in love with...knowing I am surrounded by love

I am love with the gifts of this journey, even when I scared now, I KNOW there is way through and all is well.

:) This isn't drugs talking. I am cleared headed and well. My friends helped rebalance my bodies reactions to the drugs. So I am VERY clear now. Even when I was in the midst of the scary moments of the drugs interaction I am having, I KNOW now there is a way though, I am surrounded by those willing to help, and help IS there.

I am just feeling Love.

Let Karen Drucker say it in song...


Thursday, January 21, 2010

Tykerb Rash

Still trying to figure out the rash issue. I don't even remember putting the last entry in. Talking to my mom today, she referenced it.

Because my face/eyes were swollen, they are concerned and carefully following this. It is exhausting, but today I had a bit of a break from the frantic painful itching.

The plan is to slowly come down off the ER drugs, and if I swell up I go off the Tykerb.

This is small chance it isn't Tykerb. But a reaction to some other drug that has taken some time to express itself.

It is a very tiring, painful waiting game. Honestly friends, my nerves are shot. I am exhausted. And edging on getting every single drug out of my system. When I went to list them to the dermatologist, I handwrote a page of drugs, and told her of others I have taken this month, but aren't currently being taken.


That is what my body is saying.

Prayers. I want to stay on the Tykerb. Honestly, it is very very demanding on the mental side to deal with this constant back and forth, up and down, pain, almost no pain. Numbers up, numbers down. To be so close to seeing freedom for awhile, to have the possibility of it taken away....

I just can't right now.

So, no bright and sunny today. Worn out, mentally and physically.


Monday, January 18, 2010

Amazing Week

So, my skin is peeling. Like a snake shedding it's skin I as I see it. From the radiation burn. But I can bend again, and move so much more freely.

I have a horrid rash. Had me layed up for the week (including radiation burn) and in desperate pain that took me to the ER Sunday night. Got some good meds and answers Monday from the doc. It is the "Tykerb rash" but not a hideous looking one, just painful. So we are looking for ways to manage it.

Then she told me about a patient, whose mets had progressed farther than mine did, and was doing well now for two years on Tykerb ALONE. Now she won't say that if things were looking promising to go in that direction. To be in an amazing remission pattern, and NOT go in for chemo weekly. Just take my four pills, at home, daily, and deal with the rash. WOAH. Wooooooooooooah. Thank you Universe, Great Spirit, and angels on earth.

What a birthday present!!!!!!!!!!!!!!!!!!!! 35 today! Whohooooooooo!

Painful rash under control and calming down. Chemo today with Pushpa, whom I love and am so grateful for. Yesterday, was the celebration day. A kirtan with Shantala, and a brunch with friends that I deeply respect and honor. What a good time.

Love to you all

Tuesday, January 12, 2010


So, over a month ago, the doc walked in with my intuition in hand. I had told her I was getting that I should be taking a pill. We went over a few chemo pill options, none of which seemed right. But I kept insistening, she kept looking. And lo and behold, she went to a cancer conference.

A NEW (old) pill, used in a new way that the trials had just been released on. It showed that Herceptin resistant patients were showing amazing improvement when given Tykerb along with Herceptin. Basically. The Herceptin doesn't let it reproduce from the outside, the Tykerb kills it off from the inside. I have links to this research in an early blog entry.

So, we started our own trial on me a month ago...........

We follow CA 27 markers. This checks a protein (?) that only breast cancer cells let off when they are growing and reproducing. These guys stay in the bloodstream. Every 2-3 weeks we do a count check.

A month ago, when this little experiment start, my markers were around 1000.

Yesterday we tested again, about a month later.....

drumroll please...........


A "regular" person on the street runs this marker from 0-35. In a week, at this trend, I will be at 0. ZERO.

That my friends, if it holds, is the beginning of REMISSION. How long it holds, we shall see. But the next thing down the pipe, super herceptin, which overcomes Herceptin Resistence and is working WONDERS. It is called DMI, and they are trialing it at Johns Hopkins I believe. Not on the market yet.


POW - a few months ago I was wondering if Iwould be making it through. I let go into faith and followed my intution like a bloodhound. God I love my doc. :)


Friday, January 8, 2010

Breathtaking Video - The Third and the Seventh by Alex Roman

Please watch this to the end. Then read the spoiler at the bottom.

Why is this on a breast cancer blog? Because it is my blog, and I can post it if I want to. hehehehe. No really. Because, Jenna, pre-BC, was an artist. Jenna in the break I had from chemo, started film school. Jenna still loves art, architecture, and film. And this is so inspiring. And somedays, when your skin is burned by radiation, and all you do is want to sleep (not want to, all you DO is sleep), something has to keep you grounded in YOU, so you YOU don't speak abotu yourself in the third person anymore:

Please watch this in full screen mode and watch to the end.

The Third & The Seventh from Alex Roman on Vimeo.

Now, if you didn't catch that......NONE of that was real. It was ALL CG script. I am still in disbelief myself.


Radiation ends today. I can stretch again! After a year, I can stretch my arms above my head again. Totally worth the sunburn/poision ivy patch of skin on my back that is making me nuts. But that shall pass.

Yes, still on chemo. ;)